ellenw's Journey with Merkel Cell Carcinoma

Patient: Skin Cancer - Non-Melanoma > Merkel Cell Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 65

  1. 1
    • ellenw
    • Experience with Merkel Cell Carcinoma
    about 5 years ago
    ellenw's Avatar

    Diagnosed

    Oh No

    What a shock! I had Basal Cell Carcinoma 3 times over the last 10 yrs. or so. I knew it wasn't dangerous so I was sure that this new spot was another one of those. To be honest, I waited almost too long. I really wasn't worried at all. Then, after a few months of no change, it started growing out of control. I was at the dermatologist on a Tuesday & they called that weekend to let me know that they had made an appt. with an onocologist. I thought I knew everything there was about skin cancer but this was a complete surprise. I had never heard or even read anything about Merkel Cell Carcinoma when I looked on a skin cancer site.

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  2. 2
    • ellenw
    • Experience with Merkel Cell Carcinoma
    about 5 years ago
    ellenw's Avatar

    Surgery

    Procedure or Surgery

    I saw my new onocologist that next Tuesday & the surgeon that same week. She scheduled surgery in 2 weeks & brought in a second surgeon. I also have Rheumatoid Arthritis & have been on a few immune suppressive drugs for it for close to 7 yrs. now. I'm off those medications now. The surgeon wanted to wait those 2 weeks to give my immune system time to build up. The lesion was just under my right eye on my cheekbone. By the time I got into surgery, it had grown to cover alot of my cheekbone & was pushing on my bottom eyelid. I ended up losing my bottom lid & of course there was a big crater where my cheek used to be. I also had a sentinel lymph node biopsy at the same time. They found that the cancer had spread to 2 of the 3 lymph nodes they took. This all happened in June.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • ellenw
    • Experience with Merkel Cell Carcinoma
    about 5 years ago
    ellenw's Avatar

    Full lymph node dissection

    Procedure or Surgery

    My second surgery in July was a full lymph node dissection in my neck. That was 3 days in the hospital. Those lymph nodes were clear.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • ellenw
    • Experience with Merkel Cell Carcinoma
    over 4 years ago
    ellenw's Avatar

    Reconstructive surgery

    Procedure or Surgery

    Lots of reconstruction! Most of the right side of my side was laid open. He took a skin graft from my upper arm to rebuild my cheek. He did amazing work because you can hardly see the scars! After 2 yrs. I still have alot of sensitivity on that side of my face. It ranges from pain when touched to full numbness & all in between that. I'm 2 yrs. from diagnosis & so far cancer free. Very happy to be alive.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • ellenw
    • Experience with Merkel Cell Carcinoma
    over 4 years ago
    ellenw's Avatar

    External radiation

    Radiation

    6 weeks of treatment every day but the weekends. 2 weeks in I developed mouth sores & one side of my tongue was nothing but a huge sore. Even lukewarm water was too much to deal with. That was the worst of it. I ended up chugging a couple of those liquid diet drinks down most days & then using a bunch of orajel on my tongue. It was a rough but certainly worth it. At the start of my last week of therapy, I ended up in the hospital for a week with pancreatitis. I'd never even heard of it! lol. Anyway, I finished the radiation a week later. A couple of weeks later my mouth was all healed. I should mention that I was extremely tired during the treatment. All in all, the side effects were all pretty normal.

    Painless Experience: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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